Read on Twitter
Right, starting off now a bit late, but listening to @KateHumanRights's opening address, talking about what chemical restraint is and when it is used on disabled people. #DisabilityRC
Tune in here: https://disability.royalcommission.gov.au/
Tune in here: https://disability.royalcommission.gov.au/
There has been international concern about psychotropic drug use in people with intellectual disability for over 30 years, often used to sedate and restrain people. #DisabilityRC
Ms Eastman is going through the different people who are going to give evidence this week, and what they are going to talk about. (gah, this week is going to be really really tough to listen to) #DisabilityRC
Witness list is at the bottom of this page: https://disability.royalcommission.gov.au/public-hearings/public-hearing-6
Witness list is at the bottom of this page: https://disability.royalcommission.gov.au/public-hearings/public-hearing-6
She is referring to some of the previous evidence at the Health care and the Group homes hearings, and what we heard there about the experiences of people with intellectual disability. #DisabilityRC
Evidence will be given that for some disabled people, so-called 'challenging behaviours' are a form of communication, which is critical to choice, and free and informed consent. #DisabilityRC
Cmr Sackville said at the very beginning of the #DisabilityRC that there would be disabled people who would not be able to give evidence, and this hearing will be about many of those disabled people, so will hear others telling their stories.
Now talking about the interpretive declaration - what Australian Govts have said about why it's ok to not abide by what the CRPD says about chemical restraint. #DisabilityRC https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws-dp-81/2-conceptual-landscape-the-context-for-reform/international-context-2/
Here's the National Framework, that will be talked about a LOT this week. #DisabilityRC
https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector
https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/national-framework-for-reducing-and-eliminating-the-use-of-restrictive-practices-in-the-disability-service-sector
This hearing will look at how all the different regulations about restraint/restrictive practices works, and the NDIS Quality and Safeguards Commission will give evidence. #DisabilityRC
Just a reminder of HOW many reports there are of restrictive practices right now. #DisabilityRC
"NDIS providers used unauthorised restraints more than 65,000 times, watchdog reports" https://www.theguardian.com/australia-news/2020/may/27/ndis-providers-used-unauthorised-restraints-more-than-65000-times-watchdog-reports
"NDIS providers used unauthorised restraints more than 65,000 times, watchdog reports" https://www.theguardian.com/australia-news/2020/may/27/ndis-providers-used-unauthorised-restraints-more-than-65000-times-watchdog-reports
[Argh, the language of all this is so awful. Behaviour support, behaviours of concern, restrictive practice etc. All designed to distance those that inflict this harm from what they are actually doing to disabled people.] #DisabilityRC
This hearing is going to look at how all these systems work/function in Queensland. #DisabilityRC
People with cognitive disability are often escorted to medical appointments to get chemical restraint, when those escorting them have a vested interest in them being restraint. #DisabilityRC
[Feed is a little choppy atm] #DisabilityRC
Data is going to come up, again, as it has in previous hearings. Difficult to track and recognise what is happen, how much it is happening, and who it is happening too, which it comes to psychotropic medication. #DisabilityRC
The hearing will talking about the UK program STOMP to try to reduce the use of this medication. #DisabilityRC
https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
First up, we're going to hear from Paula McGowan and the experiences of her son, Oliver, that led to his death. #DisabilityRC https://www.olivermcgowan.org/
Ms McGowan is reading from her statement about the death of her son, Oliver. They now live in Australia, but these events happened in the UK before they moved here. #DisabilityRC
She supports the STOMP campaign in the UK, run by the NHS, which addresses the medication of people with learning disability (the UK term for people with intellectual or cognitive disability). #DisabilityRC
https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
Ms McGowan is now talking about 'my beautiful son.' He was very sick with meningitis as a baby, and had a stroke. He developed a mild intellectual disability, epilepsy and autism. He played football for England, and an athlete. #DisabilityRC
He was a prefect, and passed senior qualifications at school, and attended a specialist collage for disabled people. He was known for being friendly and kind, with a wicked sense of humour. #DisabilityRC
Oliver had a full life expectancy, and needed a small amount of support to live a good life. He went to hospital for seizures, then was prescribed anti-depressants when he was discharged, which increased his seizures. #DisabilityRC
He was given an anti-psychotic medication, which his mum believes were because of his autistic behaviour. He was frightened and anxious. If he wasn't autistic, his mum believes that he wouldn't have been prescribed this medication. #DisabilityRC
The effect of these medications were catastrophic. They didn't recognise Oliver, and was now having 30 seizures a day. He had very high blood pressure and sweating profusely. Found him one day with his eyes rolled back, a side effect of the medication. #DisabilityRC
[They have shown two different photos of Oliver - one before the medication, and one afterwards. The difference is shocking and terrible.] #DisabilityRC
Oliver's parents were told he was making up these side effects, and had to convince the doctors to prescribe a remedy. When he came off the medication, he returned to normal, showing he was sensitive to psychotropic medication. #DisabilityRC
Despite this, on another admission to hospital, he was given psychotropic medication again, and this caused very significant side effects. #DisabilityRC
[God this is horrifyingly hard to listen to] #DisabilityRC
Oliver died of a brain injury and pneumonia, which his family believes as a direct consequence of the psychotropic medication he was given. #DisabilityRC
Oliver had made an advance statement that he was not to be given these medications and this was ignored. #DisabilityRC
Ms McGowan joined Twitter, and over 100 Facebook groups for Autistic people to talk about this. She spent 15 hours a day to get people to sign her parliamentary petition to stop this happening. #DisabilityRC
She's talking now about her advocacy for specific training for healthcare professionals about autistic people and people with learning disability. #DisabilityRC
It's crucial to know how many people with learning disability are dying, and how many people are taking psychotropic medication. Have to address who so many people are medicated 'off-label'. #DisabilityRC
Ms McGowan sees children who are over-medicated in the classroom to control their behaviour. Thinks there needs to be more training about alternatives to medication. #DisabilityRC
[I am always a bit sceptical about advocating for 'awareness' alone without real consequences for abusing disabled people. When people don't think we matter, or that we are equal, awareness won't help much.] #DisabilityRC
All patients should be treated how they want to be treated themselves. Treatment should be done with patients, and their families, and reasonable adjustments made, including using accessible language/info. #DisabilityRC
Lots of stuff here that reflects much of the evidence from the Health Care hearing earlier this year. #DisabilityRC
Refresher: https://www.eurekastreet.com.au/article/disability-rc-reveals-important-medical-history https://disability.royalcommission.gov.au/public-hearings/public-hearing-4
Refresher: https://www.eurekastreet.com.au/article/disability-rc-reveals-important-medical-history https://disability.royalcommission.gov.au/public-hearings/public-hearing-4
Ok, adjournment now till 12.05. #DisabilityRC
And we're back. This witness is Dr Catherine Franklin from @QCIDD
https://qcidd.centre.uq.edu.au/profile/223/cathy-franklin
#DisabilityRC
https://qcidd.centre.uq.edu.au/profile/223/cathy-franklin
#DisabilityRC
Aaaand having a little break to deal with the technical issues. #DisabilityRC
Ms Eastman is asking Dr Franklin about her expertise and experience and background. #DisabilityRC
Dr Franklin started working in the area of psychiatry for people with intellectual and cognitive disability in the UK in 2004, as there was very little happening in Australia. #DisabilityRC
Works at the only (!) outpatient clinic for adults with intellectual disability in Queensland. Very long waiting lists and can't see everyone they would like. #DisabilityRC
Dr Franklin is talking about her research, which she says is clinically relevant and motivated. #DisabilityRC
Current research is to work with people with intellectual disability with complex mental health needs. Summarising the findings now. #DisabilityRC
The DRC asked Dr Franklin about how to define some of the language used. Psychotropic medication = any medication that affects the brain, particularly used for mental illness. #DisabilityRC
[Right, this is stuff that I'm struggling with. There are rights implications for the language we use, and non-disabled people shouldn't be setting the rules about how we describe ourselves, particularly health professionals.] #DisabilityRC
Ms Eastman is now asking about why we use terms such as 'behaviours of concern' or 'challenging behaviour'. Dr Franklin thinks the definitions have changed overtime and that it implies that the problem lies with the individual, which isn't true. #DisabilityRC
[Ya think?!? Then I would suggest that we STOP USING THEM.] #DisabilityRC
**grumble grumble grumble** This is not the place of the medical profession to set the language we use about ourselves. They are not the arbiters of our language. #DisabilityRC
Dr Franklin is talking about how so-called 'behaviours of concern' are communication. All of us communicate, and use behaviour to communicate. For people with limited verbal communication, it is often the only way to communicate. There is always a reason. #DisabilityRC
Behaviour changes can be communication about a disabled person being hurt, or sick or in pain, and need to be listened to, not labelled as 'challenging behaviour'. #DisabilityRC
Dr Franklin confirms that a doctor is always needed to prescribe psychotropic medication - they are the gateway. #DisabilityRC
Dr Franklin says history is important. Many of the people she works with have lived in institutions, which is helpful to understand the situation we have today. #DisabilityRC
She believes that the development of psychotropics and anti-depressants, in part, contributed to the de-institutionalisation of people with intellectual disability. [REALLY???!?!?!?!?] #DisabilityRC
Cmr McEwin is asking how people with intellectual disability can get medical attention in the community. Dr Franklin says they are getting less care now, medical people thinking this is not their issue - that disabled people should get treated somewhere else. #DisabilityRC
[I don't understand this bit at all. She seems to be saying that disabled people got better healthcare in institutions which is just a wild claim.] #DisabilityRC
People with intellectual disability often don't have a voice and aren't listened to, says Dr Franklin. #DisabilityRC
People with intellectual disability stay on psychotropic medication for a long time - start in childhood, more is added as they get older, leads to significant over-medication. #DisabilityRC
Wow. Rates of prescribing of these drugs to people with intellectual disability are over 40%. #DisabilityRC
Huge rates, and in stark contrast to the most common medications prescribed to non-disabled people which are blood pressure drugs and antibiotics. #DisabilityRC
Side-effects from psychotropic medications are common and broad. Can cause deaths in a number of ways. #DisabilityRC
Why, if the evidence is limited and the side effects are these, are these drugs used at all to manage 'challenging behaviour'? #DisabilityRC
People (non-disabled) say it is helpful in the short term. Easily available treatment, quick fix (FOR WHO???). Not treating the cause of the problem (except if the problem is actually us.) #DisabilityRC
What does this medication mean (long-term) for a person's capacity to communicate and to consent to this medication? #DisabilityRC
For people who have been given these meds for a long time, it's hard to know what is causing behaviour, or know what people were like before they went on these meds. #DisabilityRC
Dr Franklin is describe 'deprescribing' which is getting consent and understanding that someone's behaviour may change when reducing meds, but everyone needs to be supporting this. #DisabilityRC
Successful deprescribing needs to engage with families and carers which is equally important as the reduction of the medication. It is possible, but takes time. #DisabilityRC
Right, I'm done for this session (have to head to another work thing.) @PWDAustralia will be tweeting after lunch, and I will pop in when I can. Thanks to everyone who is listening and tweeting along. Am off to have a little cry. #DisabilityRC
